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I started with Sustiva/Videx EC/Zerit and switched to Sustiva/Truvada in October 2005 due to lipo issues.

And no its not the blonde hair, either, I've had that checked.

I read the Drug Lesson here tonight to be sure I had all of the facts. I just think that this stuff is wearing on my CNS. I'm not referring to the buzz you get an hour after dosing, that stopped happening to me years ago. I have motor function probs and visual perception probs.

I have had increasingly, although mild, problems while walking. This started Summer 2004, about two years after starting Sustiva. I would be walking down the street and my PERCEPTION of when my feet would hit the sidewalk seemed a little "off." I wouldn't stumble, but I would feel off-balance. This has gotten increasingly worse and I feel I'll have a faux pas in public soon. I feel like my knees will buckle sometimes. There's also a slightly light-headed feeling at times. I feel like I need to be using a cane at age 38 to steady myself.

Wouldn't that be a sight.

Since 2006 or so, I have started having problems while driving as well. Its as if there is sensory overload, too much too fast in my field of vision. Bright sunny days make it worse, sometimes temperature and the radio can be big distractions, depending on how tough it is to concentrate. If I drive over 50mph I feel like my hands aren't even on the wheel, very intimidating. This is why I don't take the highway to work. Not only because its more congested, but if I had to do 60mph for more than 10 minutes, I would become extremely fatigued from sensory overload, feeling like I would lose control of the vehicle. What do they call this, "visual-spatial" something or other?

I have been checked for everything under the sun, very aggressively over the past 18 months:

I DID read in the Lessons that motion sickness is a possible side effect from Sustiva, but from WALKING? Are they referring to the buzz an hour after dosing, or just general motion sickness? I am going to start taking Dramamine and also take the Sustiva earlier in the evening so its effects aren't as bad the next morning when I drive, if that's what this is.

How long has Sustiva been around anyway? I started it Labor Day 2002. Happy Anniversary to the stuff, huh?

I have googled this topic and there seems to be some preliminary research on it, so maybe these types of probs are just surfacing in those of us who have been on Sustiva for awhile?

Any feedback from those of you experiencing this would be appreciated. I hate to think I would have to change my regimen because my numbers are so good right now, but this is becoming DEBILITATING and exhausting.

Have you considered that it might be the Truvada instead of the Sustiva? My first bottle of Truvada had a bright red warning sticker that said "May cause dizziness" And the Truvada website says:"The most common side effects associated with Emtriva or Viread when taken in combination with other anti-HIV medications are dizziness, diarrhea, nausea, vomiting, headache, rash and gas. Skin discoloration (small spots or freckles) may also occur. Few people stop taking their anti-HIV drugs due to these side effects."

I guess I always thought it was stemming from the Sustiva because the probs started back in 2004, and because the Sustiva would give you that loopy feeling, initially. I have always thought of Sustiva as the more evil of the two!

Either way, I am going to talk to my doctor. From what I recall, a lot of these meds have "dizziness" as a side effect, but this is really becoming worse for me. I'll read up on Truvada. Thanks for your reply.

Some of it really sounds like neuropathy, though in your list it says they said "no" (of course, doctors are often wrong with this particular issue). PN is VERY common from Videx AND Zerit... and you were on both at the same time (?)

PN doesn't always happen overnight when you take the meds that cause it. It can take years to damage your nervous system and thus the symptoms can seem delayed.

I often wondered about PN as well, too. My ID doc put me on Vitamin B6 (?) a few years ago, and it didn't help. The relationship with my ID doc was strained, many people in the area don't like her. I have since found a new doc who I have only seen twice, I will see him in October.

I have brought up these issues to ALL of my docs. My PCP did the nerve conductivity test, ordered all of those MRIs of my brain, ordered the stress test and sent me to the neurologist as well. My endocrinologist (for diabetes) is in the same office as my PCP and he did some nerve testing to see if it was stemming from the diabetes.

These guys have been my docs for 10+ years, but they admit they aren't schooled in the field of HIV. I am going to really dig deep when I see my ID doc in a few weeks. He is wonderful, he listens and I can trust him.

Maybe it IS PN, but I just don't know. I am having increased trouble with my "gait" as they call it, and there's no way in hell I could walk and look back over my shoulder at you at the same time (insert blonde joke). I just would lose all sense of balance.

Yes, I was on Sustiva/Videx EC/Zerit all at the same time from Sept 2002 to Oct 2005.

Maybe ask them if you can try out a low dose (I'm on 900mg) of Neurontin and see what it does for you with PN. Neurontin is the most prescribed for PN because it doesn't interact with any HIV medications. It's worth a try -- not feeling your feet or hands is simply not acceptable, and considering your use of Videx and Zerit I'm rather surprised that they've not gone this route... but of course I'm not a doctor.

PCP's I find little value in. I'd try to locate and ID doctor who will be your PCP as well, even if it involves more travel time.

I know that PN is related to the extremities, of course, but could it manifest itself in your head as well? Sounds funny, but how do I describe it.....Like a disconnected feeling? Did you ever experience this?

I started with Sustiva/Videx EC/Zerit and switched to Sustiva/Truvada in October 2005 due to lipo issues.

And no its not the blonde hair, either, I've had that checked.

I read the Drug Lesson here tonight to be sure I had all of the facts. I just think that this stuff is wearing on my CNS. I'm not referring to the buzz you get an hour after dosing, that stopped happening to me years ago. I have motor function probs and visual perception probs.

I have had increasingly, although mild, problems while walking. This started Summer 2004, about two years after starting Sustiva. I would be walking down the street and my PERCEPTION of when my feet would hit the sidewalk seemed a little "off." I wouldn't stumble, but I would feel off-balance. This has gotten increasingly worse and I feel I'll have a faux pas in public soon. I feel like my knees will buckle sometimes. There's also a slightly light-headed feeling at times. I feel like I need to be using a cane at age 38 to steady myself.

Wouldn't that be a sight.

Since 2006 or so, I have started having problems while driving as well. Its as if there is sensory overload, too much too fast in my field of vision. Bright sunny days make it worse, sometimes temperature and the radio can be big distractions, depending on how tough it is to concentrate. If I drive over 50mph I feel like my hands aren't even on the wheel, very intimidating. This is why I don't take the highway to work. Not only because its more congested, but if I had to do 60mph for more than 10 minutes, I would become extremely fatigued from sensory overload, feeling like I would lose control of the vehicle. What do they call this, "visual-spatial" something or other?

I have been checked for everything under the sun, very aggressively over the past 18 months:

I DID read in the Lessons that motion sickness is a possible side effect from Sustiva, but from WALKING? Are they referring to the buzz an hour after dosing, or just general motion sickness? I am going to start taking Dramamine and also take the Sustiva earlier in the evening so its effects aren't as bad the next morning when I drive, if that's what this is.

How long has Sustiva been around anyway? I started it Labor Day 2002. Happy Anniversary to the stuff, huh?

I have googled this topic and there seems to be some preliminary research on it, so maybe these types of probs are just surfacing in those of us who have been on Sustiva for awhile?

Any feedback from those of you experiencing this would be appreciated. I hate to think I would have to change my regimen because my numbers are so good right now, but this is becoming DEBILITATING and exhausting.

Thanks,

~Cindy

You might want to talk to your doctor about Sustiva, being on that for that long couldn't be a good thing, I find THIS SHOCKING after 6 yrs. I was on Sustiva well over 10 yrs. ago, did you know that they now have better drugs other than Sustiva..........I would really look into this, if I were you......... if your Doctor won't do anything about this, perhaps you should find another one, I sure would

« Last Edit: August 30, 2008, 12:21:02 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I have a brand new doc that I just started going to this year, so I am confident he can help me. The last doc was horrid and not worthy of my copay! I have also been on Fortovase for 6 years from 1996 to 2002, before the Sustiva. I don't know if that means anything.

I've been on meds since 1994. Thanks for your support, I'll let you know how it goes.

Mini has had fine motor problems since, well, forever. I'm not sure if it was from her Susteva which she also started in Jan 2002 and took it until Feb. 2008. She's been on Zerit since late 2000. We're having the same problems you are with her PID not acknowledging that she has PN. Instead, she's been tested for Lupus, arthritis, vitamen deficiency, and had a bone density test. She still has problems with walking, esp. her gait, memory, and fine motor and gross motor stuff. I guess once the meds mess with the brain, even switching the meds doesn't reverse whatever damage is already done.

It does make me curious why the doctors aren't real forthcoming in the side-effects, short and long term, of the meds. Then some, like Mini's, want to pretend that it's everything BUT the meds. Do they think that we'd choose NOT to be on meds if we knew?

Wow, Mum, seems like Mini and I have the same side effects. I don't suffer any pain anywhere, but my balance and motor function gets screwy. I feel better holding onto a handrail or something when walking.

My motor problems were bad when I was having BAD anxiety and I couldn't walk in a straight line. I also remember being disconnected on the freeway too. Could it be anxiety too? That can make you dizzy. I remember you saying you had bouts of anxiety in the past, right?

edit to add: oh duh I just missed that you put "no problems" with anxiety...nevermind! <-- blonde today

seems like you have a number of different issues which may be causing/contributing to these symptoms, either on their own or together. Good that medical team seems to have taken this seriously though and explored in a comprehensive way

Sustiva - this may well be contributing/causing, for some people the cns effects persist long term, & may change in nature over time. I guess you could discuss with your dr trying a switch to another drug to see if you notice any improvement/change. I don’t think there is any reason to believe that you couldn’t maintain your numbers etc provided you switched to another active drug. If you felt it wasn’t helping, you could always switch back again.

Balance etc - you say no pain. Which points more perhaps towards some kind of demyelinization (damage to the myelin sheath, like the socks that your nerve fibers wear, or insulation around electrical cables) This can have a number of causes, incl hiv & hiv meds. Usually this would show up in the neurological workup stuff you had done - but I think it may be worth raising again with this new dr to get his thoughts. Drugs like neurontin etc, they just change the way the brain perceives neuropathic type pain - so if you not experiencing this, v unlikely to be useful

In that barrage of tests you had, did they do electronystagmography (ENG) tests? - (different from nerve conduction study type ENG) looks at picking up problems with peripheral vestibular system (the parts of the inner ear that interpret balance and spatial orientation) and/or the nerves that connect the vestibular system to brain and eye muscles

Fibromyalgia - some people do experience dizziness, sensory disturbances etc with this. So perhaps another thing to discuss with hiv consultant and/or whoever isinvolved in managing this

probably not a very helpful post, this but i do hope you can work with this new dr to get to the bottom of these problems - let us knwo what happens.

In that barrage of tests you had, did they do electronystagmography (ENG) tests? - (different from nerve conduction study type ENG) looks at picking up problems with peripheral vestibular system (the parts of the inner ear that interpret balance and spatial orientation) and/or the nerves that connect the vestibular system to brain and eye muscles

Kate~

This most certainly WAS a helpful post! I've never had an ENG done before. Funny you should mention the vestibular system. I went to an ENT last Spring, while waiting to get in to see the one I really had more faith in. I finally got to see Dr. Hart, the second ENT, who is the best of the best in his field around here. I also had heard of him through work with a previous employer. Dr. Hart did extensive hearing tests, which the other ENT did not. He took nearly an hour discussing everything with me, from fibromyalgia to sensory perception to HIV.

He DID write me a referral to the Vestibular Lab at Johns Hopkins in Baltimore, Maryland. He said the only reason he wrote the referral is because I really appeared to want some answers. He guessed that I would go to the lab, have them strap me into a chair while flashing bright lights at me, and see how my sense of balance was affected.

He also said that the tests would probably come out normal, so I didn't go. Hopkins is a long drive for someone experiencing the problems I have. I just don't fully believe that Hopkins WOULDN'T find something wrong with my perception. There is definitely something "not right" with how I am feeling.

Unfortunately, the thing I find time and time again is that any doc other than an HIV specialist would run you through a bunch of tests, not taking into consideration how HIV takes its toll on our system. These docs mean well, and sure, its nice to hear you're "OK" with regard to one test or another, but......

......you're still left with questions as to why you feel like crap.

I just might have to see my HIV doc in the next two weeks for an extra visit, to discuss how I'm feeling. The suspense is driving me crazy!

Thanks for your feedback, esp on the vestibular aspect. Yes, it has been noted, but not explored.

You might want to talk to your doctor about Sustiva, being on that for that long couldn't be a good thing, I find THIS SHOCKING after 6 yrs. I was on Sustiva well over 10 yrs. ago, did you know that they now have better drugs other than Sustiva..........I would really look into this, if I were you......... if your Doctor won't do anything about this, perhaps you should find another one, I sure would

Denb -- are you sure we're talking about the same drug? Sustiva, which is also part of Atripla, is probably the most commonly prescribed antiviral on the market these days. Also, you said you were on it well over 10 years ago. Sustiva came to market in 1998, exactly 10 years ago. So maybe your thinking of another drug, and getting the names confused.

I agree that Cindy might want to consider switching off of it because of the issues she's having, but your broadstroke statement about Sustiva doesn't make any sense.

Denb -- are you sure we're talking about the same drug? Sustiva, which is also part of Atripla, is probably the most commonly prescribed antiviral on the market these days. Also, you said you were on it well over 10 years ago. Sustiva came to market in 1998, exactly 10 years ago. So maybe your thinking of another drug, and getting the names confused.

I agree that Cindy might want to consider switching off of it because of the issues she's having, but your broadstroke statement about Sustiva doesn't make any sense.

I was on Sustiva in 97/98 when it was in clinical trails, and after it was approved "98" then was on it untill 2002/2003, (about 3 or 4 yrs) I was on it, but, it didn't work all that well for me, so, I was put on something else I forget what my ID Doc replaced it with, ( might have been Reyataz or Zierit?) but I had VERY BAD neurotpathy, couldn't feel my hands or feet, and the DREAMS were down-right SCARY, I also had the altered LOC = level of conciousness ( I would run into walls, tables, or just about anything that was in the way) I was glad when I was taken off the Sustiva, afterwards most all of the side-effects dissapaired as well ......I wish I could recall all of the Meds I've been on ( in the last 20 yrs) ,but I'm not as good at remembering like you are at 52 yr old my memory seems to elude me.....LOL

« Last Edit: August 31, 2008, 03:03:47 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

There is emerging evidence that Sustiva can cause and/or worsen facial lipo as well. You mentioned this in one of your posts but you don't look like you have facial lipo - very nice pic by the way. I have heard others mention co-ordination issues with this drug after taking it for a while. They reported improvements when they stopped - I can't offer any research to support this just individual reports. Hope things improve for you.

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I've taken Sustiva at 400mg daily (less than the regular dose) since 1999. I had no balance problems until October last year. But, the cause turned out to be a middle ear infection that was originally misdiagnosed as food poisoning. The balance problem came on all of a sudden one morning at work and I began to throw up and had to go to the bathroom with severe diarrhea. I could not stand up and had the experience of the room spinning. I could not turn my head right or left without it feeling like it wanted to keep turning. I also could not walk forward and look back, left and right at the same time without the sensation that I might fall down. Always a fast typist, that skill was also greatly diminished during that time. That also signaled to me that something had gone quite wrong. There was no pain at all the first day but the second day I experienced tenderness below my jaw line and a swollen gland. The doctors ran all sorts of tests and gave me antibiotics when I then told them that I thought I had an ear infection. I took the antibiotics and greatly improved in about five days. I had lingering balance and coordination effects for about a month after the antibiotic treatment and then it all went away completely.

I am happy to report that I am back to my old executive secretary typing speed and efficiency. I continue to take Sustiva daily at 400mg. Although I and my doctor are aware that Sustiva can contribute to motor skills impairment in some patients, my doctor has not recommended that I discontinue the drug as it was not ruled to be the cause of my particular problem at the time.

Finally, here is a link you might find interesting that deals with mis-diagnosis:

Thanks for your replies. I was on Zerit which really caused some facial lipo in 2004 - 2005, and then my doc took me off of it. I sure don't have the same round, Polish face I did before, but this could also be due to a number of things (AGE! lol).

Yes, I thought of the ear as the problem, too, but I went to two ear doctors, the second being held in very high regard. I have slight tinnitus now which may be from allergy meds. I am wondering if the onset of seasonal allergies in the past 1-1/2 years is the culprit.

Thanks for the link, I am going to read through it. I never had the severe symptoms you experienced -- no spinning, no nausea, no vomiting, just really having balance and perception issues.

I have slight tinnitus now which may be from allergy meds. I am wondering if the onset of seasonal allergies in the past 1-1/2 years is the culprit.

Humm......... I never knew that allergy Meds may cause tinnitus, thanks for the tip on that, I do know, that I don't like to take them unless I REALLY need them, as they are VERY addicting so I will AVOID them if I really have to I can say THIS.......(sometimes my tinnitus in my arms) get's so bad, that I cannot even lift weights, I have to ride-out-the pain for about a week or so, before I can resume my weight lifting again

« Last Edit: September 08, 2008, 10:45:18 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

"Tinnitus can be perceived in one or both ears or in the head. It is usually described as a ringing noise, but in some patients it takes the form of a high pitched whining, buzzing, hissing, humming, or whistling sound, or as ticking, clicking, roaring, "crickets" or "tree frogs" or "locusts", tunes, songs, or beeping.[3] It has also been described as a "whooshing" sound, as of wind or waves.[4]. Tinnitus can be intermittent or it can be continuous. In the latter case, this "phantom" sound can create great distress in the sufferer."

"Tinnitus can be perceived in one or both ears or in the head. It is usually described as a ringing noise, but in some patients it takes the form of a high pitched whining, buzzing, hissing, humming, or whistling sound, or as ticking, clicking, roaring, "crickets" or "tree frogs" or "locusts", tunes, songs, or beeping.[3] It has also been described as a "whooshing" sound, as of wind or waves.[4]. Tinnitus can be intermittent or it can be continuous. In the latter case, this "phantom" sound can create great distress in the sufferer."

Yep, damn tree frogs are always with me these days.

"Tendinitis"...........is what I thought you meant.........but thanks for the definition of "Tinnitus" at least I now know what that is....thanks for the schooling..................I was way off, wasn't I I was talking Apples, and you were speaking Oranges.........LOL

"Tendinitis" or From Wikipedia,

Tendinitis or tendonitis (from the Greek Τενοντίτις, 'itis' denoting inflammation or swelling) used to be thought of as a painful inflammation of a tendon, however, there is rarely much inflammation associated with the condition, thus 'tendinitis' is an inaccurate term, 'tendinopathy' being currently used. More recent research indicates that tendinopathy is an overuse injury resulting in microtears in the muscle fibres, leading to an increase in tendon repair cells, yet an absence of inflammatory cells. This may lead to reduced tensile strength, thus increasing the chance of tendon rupture. Generally tendinitis is referred to by the body part involved, such as Achilles tendinitis (affecting the Achilles tendon), or patellar tendinitis (jumper's knee, affecting the patellar tendon). Chronic overuse of tendons leads to microscopic tears within the collagen matrix, which gradually weakens the tissue.

« Last Edit: September 09, 2008, 08:46:25 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Well, I saw my HIV doc yesterday, made a special visit just to discuss all of my balance probs. We had my labs from over the past year or so, but he wants to retest me for Lyme Disease, syphilis and Hep C. I have been checked for all of these before, with good results, but he wants to make sure. I'll have my labs done next week.

Doc also mentioned a possible drug holiday from Sustiva (4 wks) as a last-ditch effort after all other things have been investigated. It sure would be interesting if I went off of Sustiva and felt better. I have blamed these physical symptoms on everything else and have checked out fine.

I took a day off work today and had to go to the store to get a few things. As soon as I got out of my Jeep and stood up, I started getting light-headed, like my blood pressure was dropping. Maybe I'm just run-down, but this is really perplexing, why do I feel this way all of the time? More later when I have some answers, even though I could bet money on how the labs will turn out. F-I-N-E.

A friend mentioned possible sleep apnea? Who knows? I don't snore but I sleep on my tummy. That would help to explain why I am so run-down during the day. And maybe my lipo gut isn't allowing me to breathe "productively." I'm a mixed bag. Wish me luck.

I suppose I could have been at risk for Lyme disease as a child. As for syphilis, I really don't think so.

I have spent the evening reading up on different things and am looking more closely at diabetic ketoacidosis (DKA). While I realize that DKA is an acute event, having suffered one in 1987 myself, I wonder if I have high levels of ketones in my blood that could be leading to disaster? My sugars are all over the place, always have been. Over the past two years my A1C has been above the level recommended by the ADA, but only slightly. I have been diabetic and on insulin for 27 years, since age 11 in 1981. I already have an appt to see my endocrinologist on 9/30, so I am going to see what he thinks. I have incurable thirst all of the time, even when my sugars are good, and my labs always seem to show that I am dehydrated, according to my PCP.

I wonder if there is such a thing as "long-term" DKA, without the vomiting and acute symptoms that you would suffer during an actual episode?

This will probably sound like a really silly question, but are you taking any supplements?

Your symptoms aren't a million miles away from what I was experiencing a while back. In my case, the culprit turned out to be that single solitary daily (and quite unnecessary) complete A to Z multivitamin I was taking. The only clue was an unusually high level of vitamin D which coincidentally showed up as a casual lab comment when I was being tested for something else.

Within two weeks of discontinuing the vitamin pill: not only had the slinky coils (which I swear were attached to attached to my feet) vanished; but all symptoms of peripheral neuropathy had also gone.

Selenium toxicity is top of the suspect list at the moment, but the jury is still out pending more lab results.

I am absolutely not advocating stopping all supplements; but if you are taking them and experiencing problems, please don't assume that they are benign. Take a step back, look at the whole picture and make sure your doctor knows exactly what you are taking.

Some time ago, I recall bringing up Lyme disease to you as a possibility (my mom had it and it affected her gait/motor skills in a pronounced way) and I thought you said you'd been tested for it.

The reason I first suggested it is your region of the country is prime for Lyme-carrying ticks, add to that you've got a dog and you've spent lots of time outdoors doing yardwork and running the hounds.

If in fact you haven't been tested for it, you should. It can have a long, cumulative affect and, thankfully, when diagnosed, often responds quite favorably to the intense anti-biotic regimen used.

I just went back and re-read my 1st reply. I failed to mention that once Mini was taken off Susteva, her falling episodes greatly diminished and much of the "fog" lifted. It took from Feb. until about April / May to see noticable results. We literally were sitting around one evening and said, "Mini didn't fall today."

The issues have not completely disappeared. She has some really crazy hazy days, her muscles are still spastic, she falls on very rare occasions, but she has vastly improved. She's learned, too, to not wonder too far and grab a hand when needed. Do you notice that things get worse later on in the day or when you are tired? Mini gait seems to get more eratic the more tired she gets.

I'm with Matt. Ask your doc about switching from Susteva to something else.

I was tested for Lyme disease last March. One of the 15 or so "markers" came back reactive -- not enough to warrant actually having Lyme disease, according to my PCP and ID docs. The range for the test was anything over 0.90 was "positive." I was 1.11, but told that I didn't have enough reactive markers to be concerned. They thought perhaps I was exposed as a child? Its confusing.

Yes, Mum, when I am tired or at the end of the work day, things get worse. I can be sitting at my desk for an hour working, not doing anything physical, but as soon as I stand up, I'll be a little "off." What really sucks is trying to drive home. I can't go on the highway and speed along, too many fast-movers out there and my reaction time wouldn't be quick enough. So, I plug along on the back roads, occasionally getting up to 55mph in some spots, but I know I can take it easy on that route. Downside is, it takes longer to get home, but at least its safer.

Its not to the point where I need to keep myself from driving, but I fear that things may get worse, so I am being very assertive in getting some answers.

I had my labs done on 9/23, last Tuesday, and they drew 12 vials. I go see my endocrinologist tomorrow and can get a copy to look over before meeting with my ID doc in mid-October. I hope I can get some answers. My neck has been a wreck, but I am curious about the Lyme disease results. I'll keep you posted.

So, considering all of the damn stress I have had for three months, this looks good. I will really have to look into getting my neck taken care of, cause I think its the root of all evil, more so than side-effects from Sustiva.

Wish me luck. I think my commute is hurting my neck! I'm looking for a job closer to home. Easier said than done.